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Canada: Elizabeth May's Lyme Disease Bill Passes Senate

Canada's Green Party has been able to pass a Lyme disease bill through both chambers, and it's ready to become law. This bill calls for the Canadian government to build a comprehensive strategy against the epidemic of Lyme that's taking place in their country, but this strategy needs to include not just medical authorities, but communities and patient advocates.

Hopefully this law puts an end to the witch-hunt of Lyme doctors that has left Canadian affected by the disease with no recourse but to travel to some USA states to get treatment.

The spectre of a Canadian “Lyme epidemic” prompted Green Party Leader Elizabeth May to propose Bill C-442, itself a “national action plan” on Lyme disease. It passed through third reading in the House of Commons in June and has been referred to the Senate.

The bill was necessary. Canada has assumed the ostrich position toward Lyme for decades. Stories abound of people eventually diagnosed who were initially told by their doctors that they couldn’t have contracted Lyme because black-legged ticks don’t live in the vicinity. Lawsuits have been launched, one against the Canadian military. Lyme misdiagnosis in Manitoba is the subject of a Ph.D. thesis. It is a topic riven by rancorous debate. One area of dispute is the conventional wisdom that Lyme almost always announces itself via a bulls-eye rash. Lyme advocacy groups and “Lyme-literate” doctors dispute this—a position backed by a recent study of children in Nova Scotia that found undiagnosed Lyme led to arthritis: 76 per cent of those children showed no sign of a rash.

As that story illustrates, getting Lyme diagnosed can be difficult. As reported in Maclean’s, the two-tiered testing protocol used in Canada and the U.S. is riddled with false negatives and is unable to detect all bacterial strains and co-infections. Health Canada said as much in a 2012 advisory. Lyme’s early symptoms—fever, chills, joint pain, headache—accompany many conditions. Yet, early detection and treatment is critical; untreated Lyme affects neurological and motor functions, manifesting symptoms often misdiagnosed as MS, Parkinson’s and ALS. Lyme advocacy groups refer to this as “chronic Lyme,” a definition rejected by the Canadian government and by the Infectious Disease Society of America (IDSA), which sets Lyme treatment guidelines. They both refer to lingering or worsening symptoms as “post-treatment Lyme syndrome,” which assumes Lyme was identified and treated in the first place. Here, too, debate is polarized. IDSA guidelines advise Lyme can be effectively treated with no more than four weeks of antibiotics. Lyme advocacy groups and doctors believe long-term antibiotics are required to vanquish the infection; Canadian doctors who’ve treated “chronic Lyme” with long-term antibiotics have been disciplined and/or seen their medical licences revoked, sending many Canadians to the U.S. for treatment.

It would be good to report that the government’s new “action plan” brings clarity, direction and help to Canadians suffering from Lyme disease—as well as those currently undiagnosed. But, fairly quickly, it becomes clear that by “action,” the government is referring to what people need to do to avoid being bitten by a tick in the first place. A big part of its awareness and education includes directives: Wear long sleeves and light colours in the brush; use bug repellant; shower after being outdoors; do daily “full body” checks for ticks on yourself, children and pets. Those who find a tick are advised to send it in for analysis. Canadians are also told to keep their lawns “well-maintained” and “to seek medical help if experiencing a range of symptoms.”
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Of course the IDSA-backed AMMI Canada (Association of Medical Microbiology and Infectious Diseases Canada) tried to fight this bill tooth and nail, and to prevent it from even being debated. And they lost: the bill won Commons approval and only needs royal assent to become law.

This is an article from 2014, when AMMI Canada was mounting a campaign against the passing of Elizabeth May's Lyme bill:

Their concern: The bill appears to support the notion that significant numbers of people in Canada are suffering from a condition they believe to be chronic Lyme disease and that these individuals are being failed by a medical system that refuses to accept that diagnosis.

Further, the preamble of the bill suggests Canadian medical guidance on how to spot Lyme disease relies on U.S. guidelines it terms "so restrictive" that they severely limit the diagnosis, leaving sick people to suffer.

The organization, the Association of Medical Microbiology and Infectious Diseases Canada or AMMI Canada, is hoping to persuade the committee to strip three paragraphs from the preamble to the bill, saying it can support the rest of the document.

But Green Party Leader Elizabeth May, who proposed the bill, says that isn't possible at this stage.

Amendments would effectively kill bill: May
May, an MP for the British Columbia riding of Saanich-Gulf Islands, says the preamble cannot be altered without sending the bill back to the House of Commons.

And that, she says, would effectively kill the bill; there would not be enough time for it to make its way back through Parliament before next fall's election.

May doesn't see the problem, however, insisting the preamble does not take sides on the very thorny issue of whether chronic Lyme disease exists.

"This is an attempt on my part to be completely non-partisan and also not to take sides on the heated debate about whether there's such a thing as chronic Lyme or whether there's post-Lyme syndrome," she said in an interview.

"I'm not a doctor. I'm not taking positions on these things."

But infectious diseases specialists feel May has done just that by framing the bill with wording that questions the current diagnostic guidelines and quotes a B.C. government report supportive of the views of the vocal Lyme lobby.

Bill 'gives a false state of the science'

Their fear is that in criticizing the existing guidelines, developed over the course of several years by the Infectious Diseases Society of America, the bill is tacitly supporting another approach to diagnosing and treating Lyme disease, developed by the International Lyme and Associated Diseases Society.

An independent review of those guidelines, commissioned by Britain's Health Protection Agency — now Public Health England — concluded they did not provide "a scientifically sound, evidence-based approach to the diagnosis and care" of patients with Lyme disease.

"It sets a tone and it gives what I think is a false state of the science around testing and clinical treatment of Lyme disease," Dr. Bonnie Henry, B.C.'s deputy chief medical officer, says of the preamble to May's bill.

Dr. William Bowie, who teaches infectious disease medicine at the University of British Columbia, will represent AMMI Canada at the Senate hearing.

Bowie, who has been involved in drafting the Lyme disease guidelines drawn up by the Infectious Diseases Society of America, feels the preamble dismisses the whole evidence-based process used to arrive at this type of guidance for medical practitioners.

Proposal garnered cross-party support in Commons
"We have the funny situation of this person who fights for climate change and believes in science ... who here is totally missing the point," Bowie says.

"She's arguing on behalf of an anti-science lobby, which seems to me to be incredibly ironic."

May disagrees.

But she admits she had anticipated encountering push-back to the bill's preamble — though not for the sections that have raised AMMI Canada's ire.

The preamble refers to the fact that climate change is predicted to expand the range of the habitat of the ticks that carry Borrelia burgdorferi, the spirochete that causes Lyme disease.

May expected to have to fight to hold onto that reference to global warming.

But C-442 has garnered support from all sides of the political spectrum. It is expected to pass, which is rare for a private members' bill.

It calls on the government to convene a conference of provincial and territorial ministers plus stakeholders — medical experts and patient groups — to develop a comprehensive Lyme disease strategy.

The strategy would include a national surveillance program to track rates of infections, establish guidelines for preventing infections, diagnosing when they occur and treating them according to "current best practices."
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Good for the Canadians fighting for this bill. If it holds up, it would represent another important win, and another big step in the right direction.

Areas for concern: acknowledging the scope of the problems represented by late stage Lyme sufferers. The push back in great measure comes against "chronic Lyme", as well as against purported flaws in diagnostics. The reasons for both are obvious.

But the absence of talking points concerning the diagnostic problems for late stage cases, compounded by what many believe is a lack of effective treatments for late stage, is particularly disconcerting - especially when one realizes there is little to no research being conducted for either late stage diagnostics or late stage treatment.